This is an amazing story. A father and his 13-year-old son go swimming in the ocean. They're separated by strong currents and drift out into the open water. The father uses phrases from Disney movies to communicate with his son: "To infinity!" he calls. "And beyond," the boy calls back, ever more faintly.

After a while, he can no longer hear his son. He treads water, alone, for fifteen, maybe sixteen hours until he's finally rescued by a fishing boat. Not long after, the Coast Guard finds his son. He'd been treading water, stung by jellyfish, dehydrated, but alive.

Maybe you've read this story already, heard that the boy has autism, that maybe his autism prevented him from feeling the fear that would naturally engulf the rest of us in such a terrifying situation. Maybe his autism saved his life.

It's astonishing and also so interesting because it gives us a hint into what the brain can overcome, given the right focus. (Scientists, get on that, please, willya?)

But for me, mom of a boy also on the spectrum (one who won't be swimming in the ocean any time soon, thankyouverymuch), one of the greatest delights was to watch the video of the family on their sofa and witness the casual ease and affection with which they related to their son.

This is an amazing story, true, but watch the video if you can. See the way the father smiles and hugs his boy, ruffles his hair. Watch how much he loves him, how unselfconscious he is, how joyous. We don't get to see many happy media images of autism families, and it was such a treat.

To me, that was as gratifying as the story itself, as worthy of our respect and attention.

With all the hoopla around the Olympics, the Presidential campaign and--oh--Miley Cyrus' birthday, it's been easy to forget one earth-shattering piece of news: Isaac starts Kindergarten tomorrow. He'll be in a local public school, in a full inclusion class, which means: 19 typically-developing kids, one teacher, one part-time aide, and him.

I'm having worse nightmares than after the time I accidentally saw a few seconds of Saw II while flipping channels late one night.

So here's the thing: all of his therapists think he's ready. He loves circle time. His language has developed wonderfully. He's sweet and easygoing, with a great sense of humor. He has good "pre-academic" skills; in fact, some are way out there: he read his very first book, Hop on Pop, just this past week. He can count to ten in ten languages, including Portuguese, Swahili, Polish and Mandarin.

And he's on the autism spectrum.

So he wanders. He needs a lot of support: sometimes with the tasks, and sometimes just with the structure and flow of things. He's easily distracted. He doesn't reliably understand social cues. He's afraid of loud noises. (Kindergarten is full of loud noises.)

So tomorrow we pack his lunch and backpack, and send him off into a brave new world.

Wish us well.

For any of you sending your children (quirky or not) to Kindergarten this Fall, please leave a comment and let us know how it's going so we can share success stories and survival tips. It takes a village, remember?

It made me flash back to a couple of years ago, when I would roam the aisles of our local toy store, hoping for the magic toy that would capture Isaac's attention and imagination. I tried trains, Play-Doh, Legos, blocks, puzzles. A lot of it sat in the closet after one or two tries; he just wasn't ready for any activity that lasted more than a few seconds.

At the time, I was pretty heartbroken, but when I think back on it, I realize that he was learning, and in his way, expressing preferences early on. Movement was exciting, as were silly games, enclosed places and rhymes. He loved nothing more than "sitting in the tent"--a crocheted throw blanket tossed over our heads--telling stories.

He was bored and frustrated by Lego and Play-Doh, because he didn't yet have the manual dexterity to make them fun. It was work to him--a frustrating exercise. He didn't see the point of blocks, adored bubbles and balls, had no patience at all for little figurines. And electronic toys? Too overstimulating. Buh-bye.

"Put all the little toys aside," our Floortime therapist recommended one day. "When you play with him, go for big movements, exaggerated expressions, sounds and rhymes. You know he loves physical play: do more of that. Do things that make him move and that encourage him to look at you. Try to get him to reciprocate."

In short, think about what he likes, keep him moving--and make play about that.

Duh.

Nearly three years have passed since those first frustrating attempts. Today Isaac is five. He still loves bubbles, rarely travels outside the house without a Matchbox car in hand, and comes home from school with paintings and drawings. He's a lot more tolerant of new activities, but we still hang "in the tent." And the biggest fun still comes from the impromptu stuff, not elaborate, expensive toys.

In fact, I realized last night that a lot of the things that work best for Isaac--bubbles, Matchbox cars, balls--are the toys of my childhood (except the computer--he's definitely a 21st-century boy there.)

If you are looking for gifts, remember that you don't have to spend a lot of money (and--my opinion--it's better if you don't). One of the best gifts we received from my sister was a box of six Hot Wheels cars--I think she spent about $10, and we handed out those cars for months.

My original advice for gift-giving for special needs kids still stands--when in doubt, ask. But I would also add this: don't forget that, different or not, kids are still kids. Toys get loved and lost, broken and otherwise mangled in the course of everyday life, so don't go nuts. Ultimately, the thought really does count.

By now, nearly everyone has heard about the latest Michael Savage scandal. Having apparently tired of wishing AIDS on gay people, Savage has now found his latest target: children with autism. According to a July 22 New York Times article by Jacques Steinberg:

'Mr. Savage suggested that “99 percent of the cases” of autism were a result of lax parenting. He told his audience: “They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life.’ ” Among the other admonitions he felt children with autism should be hearing, he said, were: “ ‘Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’ ”

Since then, Savage has been assailed from all sides, and devoted yesterday's show to revisiting the issue with callers. He's also updated his Web site with a bunch of rhetoric meant to recast him as an advocate for misdiagnosed children.

But what Savage so ignorantly/cynically overlooks is the effect of his words on the very children he pretends to defend. Unless, of course, calling your child an idiot is his idea of positive parenting.

I honestly don't think Savage is worth any more of our collective time. What seems clear at this point is that, having attacked pretty much everyone on the planet, he's now desperate for fresh material. He's pushing whatever sad little corner of the envelope is left.

It's cynical, and it's pathetic. If even one child is hurt or denied treatment because a parent heeded Savage's words of wisdom, that will be a tragedy. And it'll be on his conscience.

Enough said.

]]>http://blogs.babycenter.com/mom_stories/4787/feed/44When it comes to special needs, all politics is localhttp://blogs.babycenter.com/mom_stories/when-it-comes-to-special-needs-all-politics-is-local/
http://blogs.babycenter.com/mom_stories/when-it-comes-to-special-needs-all-politics-is-local/#commentsTue, 15 Jul 2008 04:23:47 +0000http://blogs.babycenter.com/momformation/2008/07/15/when-it-comes-to-special-needs-all-politics-is-local/Read more »]]>Susan Etlinger posted in Mom Stories

I am as guilty as anyone. I read the paper (mostly online now), and scan the national and local headlines: Taking Necessary Steps Against Credit Crisis. California May Ban Trans Fats. Okay, I think. Okay. Nothing I have to deal with at the moment. No action needed.

You see, I'm one of those parents: one who fought our insurance company to cover my son's speech and occupational therapies, which no fewer than two developmental pediatricians independently deemed to be medically necessary. After months of "losing" our paperwork, stonewalling and asking again and again ad nauseum (literally) for the same invoices (surely they have heard of filing?), the insurance company finally denied our claim. We requested an independent medical review and won handily: 1-0, 3-1. Not quite Venus Williams, but it worked.

As we begin our kindergarten adventure, we have to wonder whether the support provided by the school system will be enough. If it isn't, we will fight for what is, because he is our son, and it is our job, and we'd never sleep at night if we didn't do absolutely everything we thought was necessary for him.

But here's what worries me. A lot of these news stories have the effect of pitting parents against each other: the San Francisco Chronicle article calls regular education "a virtual ATM card for special education." Oh great.

The implication is clear: if something isn't done to fix the way special education is funded, we parents are going to end up at each others' throats for budget dollars. Look at Kim's recent post: nobody's happy, wherever they sit. (The funny thing is, some of the gifted kids have special needs, and some of the special ed kids have skills that place them in the gifted range. My preschooler, who is diagnosed on the autism spectrum, reads at a first grade level. So that makes things even more fun.)

The thing that infuriates me is that pitting parents against each other is the easy way out. It's the shiny "Hey! Look over there!" distraction meant to divert attention from the real issue: what must we do as parents, as voters, as human beings--to provide all our children the best possible education?

So here's what I propose: let's not get distracted. Let's. Not. Play. That. Let's keep the pressure where it belongs.

It seems like every week or so I am reading about yet another child with autism who was kicked out of church, or off a plane, or voted out of class, and I shudder and think: that could be me. That could be us. We've been there many times: in the drugstore, when it becomes apparent that I will not in fact be purchasing Isaac's 865th matchbox car, thereby causing rapid, catastrophic meltdown; or at a restaurant, where fear of unfamiliar potties causes him to howl and bolt for the door; or on the street, when I inform him that no, we won't be entering an unfamiliar apartment building to ride their elevator.

But let's be honest: for a kid on the autism spectrum--for any five-year-old, actually--he's a pretty mellow, good-humored, gentle guy. It's just that certain things, like delayed gratification, like fear of loud and surprising noises, can cause a sort of zero-to-ninety acceleration into a tantrum that's impossible to stop. And that frightens the natives.

Let's be clear: when he's having a meltdown of that magnitude, it's not a behavior issue. He literally can't stop himself. And it scares and upsets him much more than it does me or, for that matter, you. It's like a summer thunderstorm: you can grab the umbrella, but you can't stop the rain. And finally the sky clears, and the sun comes out again, and eventually everybody dries off.

That's not to say that every show of temper is uncontrollable--it's not, and we don't use his diagnosis as an excuse for any kind of behavior. Isaac is expected to put his dishes in the sink, say please and thank you and clean up his toys like any other child. It's just that with spectrum kids, well, their emotional brakes don't always work as well as those of other kids. So we've learned that sometimes you have to guide them through, rather than focusing so much on making them stop.

Isaac will be entering kindergarten in the fall, fully mainstreamed, with an aide for him and for the few other special needs kids in his school. You may or may not notice him right away: he may be reading a book, or playing quietly, or climbing on the playground. You may never even guess that there's anything different about him.

Or maybe you'll be in line behind me at that next grocery store, or on that next plane when something frightens or upsets him. If you are, I hope you'll think about this. I hope you'll suspend judgment as my son, like every child, learns to cope with strong and sometimes frightening emotions. And, more importantly, I hope you'll encourage your friends and teach your children to do the same.

One day, when Isaac was about two and a half, I dropped him off at school. We were concerned about his development by then; he wasn't speaking, he had inconsistent eye contact, and he completely ignored the other children in his class. But we weren't yet completely sure what to make of it.

His teacher, not the most flexible of human beings, tended to look panicky whenever I asked how he was doing. "Well," she'd sigh heavily, "he had a difficult day." I cornered her in the kitchen one morning. There was a window over the sink that looked in on his classroom. By then, the kids were napping, and I could see his sandy hair poking out from underneath his Finding Nemo sleeping bag. "What do you think it is?" I asked, my heart in my mouth. "Well," she answered, looking away, "It's pervasive. It's just pervasive." We didn't return the next year.

I wasn't ready to hear the word "autism" in those days. I believed that my son was smart, quirky, shy, a little hesitant, funny, stubborn and just about the sweetest guy you'd ever want to know. And I was right. He was all those things. But he was also on the autism spectrum, and a number of people were trying, some in productive and some in not-so-productive ways, to tell us that.

Tonight, I was talking to the head of Isaac's current preschool, where he is one of a handful of kids with special needs. She wanted feedback on the program and asked what I, and similar parents, would have wanted to know from her--and when. And so I just said: "Tell us that you're concerned about his language, about his social development. Tell us what's hard for him compared to the other kids. Tell us what his strengths are, what you like about him. Tell us what you think he needs."

But even as I said those words, I wondered how I would have responded to my own advice those two and a half years ago. Would I have been ready to hear it? Would there have been any words that would have been easier to hear? Or did I just have to go through my five stages of denial, bargaining, anger--and finally acceptance? We got him help--a lot of it, and early--but the return to a sort of balance came much more gradually.

The other morning as I was waking up, I felt a small face close to mine, and a wet kiss on my cheek. I opened my eyes and saw my son peering down at me, smiling gently. These days, acceptance seems beside the point.

But I wonder: if a teacher or a friend or even an acquaintance was concerned about your child's development, would you want them to tell you? Or would you ask them to butt out?

The other night, I was at a party for work and someone commented that balance--you know, the elusive work-life-parenting balance--is a myth. My immediate reaction was horror, but then I remembered a conversation I'd had earlier that evening. "Susan," someone had said to me, "How do you get everything done? The full-time job, being a mom, the blogging?" "Easy," I wisecracked. "I always feel guilty that I'm neglecting something."

As the evening wore on, I thought about the balance comment and my characteristically smart-alecky response. And it occurred to me that, even though I'd actually thought I was pretty funny, I was telling the honest truth: I do feel guilty all the time. There I stood, a flood of email in my inbox, J. and Isaac at home, blog posts unwritten, and all I could think about were the things I wasn't doing at precisely that moment.

So.

I rethought the comment. Is balance a myth? And if it is, what happens if I just...let go of it? Sort of like thin thighs and perfect skin and the novel I won't write, the major I didn't take in college, the grad degree I didn't get, the several thank-you notes I'm sure I misplaced when Isaac was born...What if I just...let it go?

Hmmm. All of a sudden I felt a little lighter.

Balance is a myth.

A little lighter.

When I got home that night, I took a quick look at my email, kissed J. and Isaac, put Isaac to bed. I visited a few blogs. Chatted with J. a bit. Went to sleep.

Balance is a myth.

Whether you work or not, are a parent or not, or, like me, feel perpetually guilty (or not), what do you think? Is there such a thing as balance?

I'm getting a new tee shirt: "I Survived Isaac's Pre-school Graduation." Don't get me wrong: it was lovely. There was singing, and clapping, and snack, and excellent coffee. There was talk about how it's okay to feel happy and sad at the same time. There were even presents for the kids: bags full of photos and stories for the year, each with the child's name on it and a pert little heart drawn below. There were hugs, and tears, and kisses, and siblings running amok. All in all, a great time.

It's just that we spent most of it outside the classroom, looking in.

Change is hard for our boy, as it is for most children on the autism spectrum. And sometimes, when he gets anxious, he over-focuses on noise; more specifically, on the fear that there might be noise. It's a rational fear. Sirens, buzzers, motorcycles, alarm bells: the world is full of unexpected sounds that can send a sensitive nervous system into overdrive.While other kids are peering nervously at their closets or under their beds at night, my son's boogeyman comes in the form of The Big Black Square Buzzer--you know, the pager they sometimes give you at a restaurant to tell you your table or order is ready. The first time he saw one and heard it go off was in a local mall; believe me when I tell you that life has not been quite the same since. So the graduation ceremony? No, uh-uh, not gonna happen.

But then, just as we were giving up hope that we'd ever set foot in the classroom again, the teachers pulled out those crisp white bags full of goodies and started calling the children's names, one by one. And when Isaac saw his name, neatly printed, he bolted into the room, made a beeline for his teacher and proudly accepted his bag. He stayed in the classroom for the rest of the party; taking pictures with his friends, eating way too many crackers and hugging his teachers.

Afterwards, my husband commented that he thought we'd handled the situation well, all things considered. Although we so desperately wanted to see Isaac "graduate," we let him adapt to the environment at his own pace.

If you haven't read Alice Bradley's blog, Finslippy, you're in for a treat. She's a wonderful writer: witty and breezy in a self-deprecating way. She sounds like you'd want someone to sound if she were narrating your life: smart and funny and very, very cool.

About a month ago, Alice had a miscarriage at about 10 weeks. She's been going through a tough time, and is chronicling it on her blog. It's a rough read, for me at least, because it brings up so many memories: the thrill of pregnancy, the terror at those first momentous spots of blood, the sweaty dread in the doctor's office, the grief, the pressure to get past it, and the sense of panicky failure, like a swimmer grabbing at a rock, slipping slowly under the waterline.

Miscarriage occurs in at least 20 percent of pregnancies, sometimes more. But we don't talk about it. Why not?

When I had my first miscarriage, I was shocked to discover how many women had experienced the same thing. And though it was reassuring to know how common it was, how much a part of life, it didn't make the experience any less painful.

Alice is in the thick of it, and while it feels somewhat voyeuristic to recommend you start reading her now, it also feels oddly right; as if sharing such an elemental experience across the Internet is a true expression of community and solidarity.

I still wonder how it all might have turned out differently had my baby made it to term. I don't think about it often, but when I do, I imagine a daughter. She would be seven now, an older sister to Isaac. And I know her name, even though I can't bring myself to speak it aloud.

Sometimes it's a jolt of pain, sometimes a wave, sometimes a dull ache. And sometimes it just feels like a distant tug, an alternate universe I can almost--but not quite--see.

Sigh. Wednesday, ABC News ran a story about a Minnesota church that has issued a restraining order against the family of Adam Race, a 13-year-old boy with severe autism. The priest in question alleges that Adam's behavior endangers others, while the mother, Carol Race, maintains that her son has every right to worship with her family, irrespective of disability.

This is a tough one--the type of dramatic example that calls into question the rights of the few versus those of the many. The priest, speaking for the many, maintains that Adam's "disruptive" and "violent" behavior threatens other members of the congregation. The Races say that everyone has the same right to worship, no matter the circumstances. And Carol Race argues that services are even more important for Adam and their family, because of his differences. They need their religion. They need the church.

But no one is backing down. A sheriff is stationed outside the church to enforce the order.
At 13, Adam is big and strong (6'2", 235 lbs.). From the scant details in the article, it sounds like he has poor body awareness and impulse control, which can make a person misjudge the distance between himself and others (and therefore bump into people a lot--clumsiness easily mistaken for aggressiveness, especially in such a large boy). Allegedly, he once grabbed a little girl and pulled her into his lap, which must have been terrifying for the child and her parents.

Yet there is an innocent explanation for this behavior: Adam likes people to sit in his lap because he finds the pressure soothing. Yes, it sounds strange, but that sort of "sensory-seeking" impulse--even if it is rarely acted on in quite such an intense and dramatic fashion--is common among people with autism. It doesn't make the behavior less upsetting, (and I'm sure it was scant comfort to the girl and her parents), but it gives it a context.

In fact, I bet I could go through the litany of Adam's behaviors and give you a reason for each one, but the question remains: would it matter? Does knowing the rationale for the behavior make it less threatening?

As the mother of a child on the autism spectrum, my heart says yes. It should. We have to strive for understanding and compassion. It's our responsibility to bring children with autism into the fold--whatever fold we subscribe to--and support their parents. Yet as the mother of that very same child, a sensitive and gentle kindergartener whom I would protect with my life, my heart breaks a little and says no. Some behavior is too much.

I admit it. I'm not objective on this issue, except to admit that understanding helps, but it goes only so far. So I wonder: what would you say if it were your church? Your school? Your community? Your child? Please share your thoughts in our poll, and in the comments.

My friend Jeff always knew he wanted to be a father. When he was in law school, he met someone and fell in love, and they started a life together. That was 13 years ago. His children, a girl and a boy, are now 10 and six. Mostly, he's a stay-at-home dad, and his days are spent ferrying the kids to school, playdates and various activities.

When they travel, Jeff is careful to pack his children's birth certificates and adoption decrees so that he can quickly demonstrate to skeptical officials that he is the legal parent of his children. It may seem overcautious, but he does it anyway. Because he's gay. And government officials tend to look askance at two men traveling with small children, especially when they're in the process of taking them out of the country.

Kara Swisher, a nationally-known technology journalist and blogger, does the same thing when she and her partner Megan Smith travel with their sons Louie, 6, and Alex 3. But she hasn't been bothered too much. "They believe you when you're the mother," she says drily. Thursday's decision by the California Supreme Court, that gay couples have a constitutional right to marry, highlights many of the disparities between the rights of gay and heterosexual couples in our country: the legal right to make healthcare decisions on behalf of a child. The ability to claim a child for insurance and tax purposes. "Next-of-kin" status. Which family member is granted custody in the event of a split or the death of one parent.

To avoid this last situation when starting their family, Swisher and Smith decided on an anonymous sperm donor and "cross-adoption," where each adopts one child, vastly simplifying the legal issues involved. "Who wants to be suing someone's parents?," she asks.

Beyond the rights and practicalities afforded by marriage lies the emotional impact--not only on the parents, but on their children as well. In the heated debate over whether same-sex couples should have the right to marry, the focus has mainly been on issues relating to the institution of marriage, attitudes toward gay life and the impact on the couple involved.

But there is an emerging generation of children of gay parents who will also be affected by this decision and its implications, whether it is the harbinger of a new era of acceptance (as some believe) or just a temporary blip on the political scene (as some believe). "Just think about the children of same-sex couples and their right to have their families recognized with the same respect as married couples," Jeff said. "Right now, the state officially treats us in a second-class way. This decision is grounded in dignity and respect for families like ours."

So I wonder: while the adults are hotly debating the issue, what if we were to ask the millions of children of gay couples what they think? Granted, they may not have a voice in the legislative process today, but they will one day. And what will their voices tell us then?

Quoting Tony Kushner's Angels in America, Swisher said, "The world only spins forward."

Back when Isaac was two and newly in preschool, I often listened to the wry complaints of his classmates' mothers about "the terrible twos." The fact is, Isaac's twos were fairly serene, though we were deeply preoccupied with other issues at the time.

"I can't believe the tantrums," one would say, and the next would nod, a wry smile on her face. "What about Isaac? Does he have tantrums?" "No, not really," I'd answer, looking carefully at the floor. "Wow, you're lucky," she'd answer.

And I was, but not for the reason she thought. The truth is, tantrums come just when children are starting to crave independence, even as they fear it. And as you may have noticed, two-year-olds aren't too swift when it comes to emotional regulation. So the fact that Isaac wasn't having tantrums yet wasn't a good sign. It meant he wasn't developmentally at a point yet where his will was strong enough to frustrate him when he didn't get what he wanted.

The good news? He's getting there, even if it isn't pretty. Payback is a cute, fluffy little female dog, isn't it?
The frustration came in stages.

Stage One was frustration at not being able to communicate (when he was preverbal). I remember a speech therapist, long since fired, who told us in what I thought was an unnecessarily blase tone that a lot of boys with speech delays can become violent because they're frustrated at being unable to communicate. "Great," I thought. "Thanks for that, because I don't have enough to worry about as it is." (By the way, it never happened. He's about the gentlest kid you'd ever hope to meet).

The next stage was frustration at communicating, but not getting what he wanted. You see, for a long while we were so thrilled every time Isaac asked for something that we did whatever we could to prolong the interaction.

But at a certain point, we needed to teach our newly-communicative boy that simply asking for something didn't always guarantee he'd get it. "Isaac," I'd say, "Use your words." "Mommy, can I have some more cookies please?" "Nice asking," I'd answer. "No."

The next phase was what I call "frustration at his frustration." Like a lot of children, on the autism spectrum or not, Isaac is very uncomfortable with negative feelings. So while not getting what you want is hard, the actual feeling of frustration is even harder.

Now that he is nearly five, Isaac has a lot more tolerance for frustration, which implies that he's figuring out what he needs, and developing more ways to cope with his emotions. All good stuff.

But lately, Isaac's been going through a pretty upsetting bout of separation anxiety at school. At a certain point, the reality--that he's going to have to spend the day separated from his Dad and me--hits him, and he is powerless to fight it. It's painful, exhausting and unbelievably inconvenient, since both my husband and I work full time. And I can relate, because I feel the same way when I kiss him goodbye each morning.

There's a silver lining, though, which is that this experience is teaching Isaac about identifying and working through his feelings. So sometimes these developmental detours turn out to be sort of like the scenic route: indirect, not quite what you were expecting, but satisfying on their own terms.

They closed it. Because of a whooping-cough outbreak involving 16 children, ages 6-15.

The extent of the outbreak was so severe because, apparently, only about half of the children at the school are vaccinated. When I was a child, my mom told me about polio, about how at her New York school in the 40s, some children went home sick, never to return, or to return in wheelchairs or in leg braces. It was a terrifying time, but to me, it was a vague, shadowy piece of history. That was her childhood. Those things can't happen now.

And then I hear about an outbreak of malaria, or measles, or TB, (or SARS: remember?) somewhere in the world and I realize that we're all just a plane ride or a cough on the bus away from a bunch of really nasty stuff that can have devastating consequences.

But we have been impossibly lucky. It stills felt very far away. Until today. Today it was a mere 25 miles or so away.

At the very least, it's a wake-up call--that we shouldn't forget that good health is a luxury, don't you think?

"S is for sub-basement!" Isaac crowed as we got out of the car this afternon. He'll be five in June, and sometimes it's easy to forget that, a mere two-and-a-half years ago, he had barely any language at all. (The "sub-basement" comment, by the way, is a symptom of his latest fancy: elevators. Don't ask.)

For kids on the autism spectrum, or young kids just learning language, a little visual help can go a long way. They may not be able to say "Grandma" or "cereal" or "I'm hungry," and if they also have motor planning challenges, signing may not be an option either.

There are several methods that speech and language pathologists use to help non-verbal kids communicate.
One is called the Picture Exchange Communication System, or PECS, which uses stylized icons to represent common concepts. (I keep finding little icons all over the house from the days before Isaac could speak.)

But while PECS is a useful tool in many ways, it doesn't reflect the child's personal experience, which is important for certain types of communication. What good is a picture of a house if it doesn't look like my house? A picture of a mommy if it doesn't look like my mommy?

It's simple. Basically, you upload and add captions to your own photos, design your cards and order them (a lot like Shutterfly). It's also a terrific way to make a quick social story. (Our next one, by the way, will be for Isaac's transition to kindergarten. We're going to photgraph his current school and teachers and his new school and teachers to help him manage the transition.)

Goosie cards are a bit pricey at $28 for 10 cards, but they're well-made, non-toxic and easy to clean. And I remember days when I would have paid anything, anything to understand what Isaac was trying to tell me.

The truth is, all I can think about today is that super fun and flirty dress I saw last Saturday, and how cute it looked with my black sandals, and how great it would be to go for a spa day, and read Hello! magazine, and gossip about Miley Cyrus and her photo spread for Vanity Fair, and have a long, tipsy brunch with girlfriends, and watch What Not To Wear with a big bowl of popcorn and a Diet Coke before settling in for an afternoon nap.

I'm tired of serious. I want fun.
The other day, I was talking to a new friend whose son was recently diagnosed.

"Does it get any easier?" she asked. "The acceptance?"

"It comes in waves," I sighed. "I guess it's sort of tidal that way."

So, because my conscience won't shut up, here are my deep thoughts on this, the last day of Autism Awareness Month:

I have no deep thoughts. I only have the moments that add up to a life, and no idea how many of those moments are behind me and ahead of me. Some are for work, and some for advocating for my son, and caring for my family as best I can, and connecting with friends, and for looking outside myself and trying to do good in the world.

And some, a happy few, are for silliness, and play, and lotions and powders and nothing in particular.

Several months ago, when we were touring kindergartens, I found myself astonished at the amount of anxiety people expressed about when their kids would learn to read. At tour after tour, public, private, large, small, at least one parent would raise a hand and ask what I began to think of as The Dreaded Question.

I'm not sure why I found it so annoying. It's a completely reasonable thing to ask, after all. One would assume that reading would be right up there on the list of priorities for school-aged children, right? But there was a tone to the question: a tone of impatience among many of the parents, as if little Rapunzel or Zebulon's chances of getting into Harvard and winning the Nobel Prize for Economics by age 12 would be seriously hindered if one precious minute--that could otherwise be used to stuff them full of knowledge like a Thanksgiving turkey--was wasted. Tick, tick. Tick. Impatient look at watch. Can my son read yet? No? He's 5! What on earth are you waiting for!?!

The truth is, I'm not worried about Isaac learning to read.

He'll be 5 in two months and he's already most of the way there. Today he read his first "story," which goes something like this:

"Once upon a time, there was a boy. He was tired so he went to sleep. The end."

To be more precise, I'm not worried about Isaac learning how to read written language. He can already do that. I'm worried about him learning how to read social language, body language, the between-the-lines stuff that happens every day, with adults and kids alike. Which he usually, totally misses.

The other day, in preschool, we entered to find a group of children clustered around a large brown box of chicks, newly-hatched and peeping adorably. "Isaac," one teacher said, "Come and see the chicks!" Isaac was a beat behind, not sure yet whether he was willing to approach the box and find out what was inside. One of his schoolmates, a little girl named Annie, took his hand and led him closer. "Come on, Isaac!" she said authoritatively, moving the other children aside so he could see. He glanced briefly inside and moved away.

I'm not a fan of competitive parenting, of this need to push our children as fast and as far as we can. For the record, I felt this way long before I had Isaac, and long before I knew he would have special needs. But I've learned through the process of being his mom that reading is a huge symbol, really, of all our hopes and dreams and fears for our children. Reading opens up a while world of knowledge and experience, and it has also become cultural shorthand for academic achievement and future success.

So really, who am I to judge other parents for wanting these things so desperately for their kids, or even, let's be honest, for their own sense of self-esteem? No one is completely immune from that.

But ironically, I suspect that when it comes to achievements, my sweet, funny, oddly brilliant, quirky boy will breeze through a lot of the hard stuff and struggle far more with the supposedly easy things.

So, as he enters kindergarten, that's what we're going to have to learn to sound out. That's what we're going to have to learn to read, letter by letter, day by day.

It may seem hard to believe, but sometimes, in the midst of the everyday, I forget that Isaac is, in common parlance, "special." I forget because he wakes me with a grin and a big kiss, or because he barrels into my arms when I come home, or because he so fluidly reads words off walls, or because, a lot of the time, our communication feels so natural.

But the other day, when he started crying and protesting about not wanting to go to school, it hit me. Hard.

He wasn't acting out. He sat very quietly on the bed. Suddenly, his mouth turned down at the corners, his lip began to tremble, and he said, very clearly, "I don't want to go to school. I want to stay home with Mommy."

"I know, pal," I answered, pulling on his socks. "But today's a school day for you and a work day for me. I promise we'll play when we get home."

[Cue flood of maternal guilt, heart slowly breaking]

Wailing now. "I don't want to go to school!"

Somehow, this seemed different, but I couldn't put my finger on it.

"Why, Isaac, did something happen at school?"

Silence. This is where we hit the wall.

It could be, in fairness, any number of things. It could be that he's still not recovered from spring break, when he had so much lovely, unstructured time with Daddy. It could be that he's coming down with something, or that he didn't sleep well. It could be that there was a fire drill, and the sound frightened him. Or another child could have pushed him on the playground.

I don't know. And he can't reliably tell me yet.

Slowly, slowly, he is learning to explain--to go beyond the simple declarative to express his thoughts and feelings. But it is hard work.

I asked again. "Did something happen? Are you worried about something?" [Oh great, Susan, I think, That'll be simple to answer].

"No." A pause. I don't want to tell me."

"Isaac, do you mean you don't want to tell me?"

A whisper. "Yes."

If he were a typically developing child, that answer would send chills of panic up my spine. It would mean that something had happened that was too awful to explain, even to Mommy. But this is fairly common for Isaac--he refuses to "tell" because the effort of feeling how he feels, plus putting the language together to explain it, is overwhelming for him at that moment.

So I don't know. I have to guess, and watch, and let him know I'm here, and that it's going to be all right. And then take a deep breath and wait for more clues, or more language to come.

The other night, I spoke on a parent panel in front of a university class on special education. Toward the end, one of the students asked about the impact of having a child with special needs on the parents' relationship.

Well, you've probably heard a bunch of horrible statistics about divorce rates, and I can't tell you they're wrong. I just know that, while we're not always in sync, we have come up with a few strategies to help us cope through the rougher patches.

First, there was stress eating. That one, we discovered early on, was not terribly productive, so we've moved on to healthier foods and taking long weekend walks together. Better for the heart, better for the butt, better for the state of mind.
We also have a pretty helpful way of handling weekend time. Both J. and I have jobs that require us to talk to people all day long, and by the weekend, we're both ready to move to Antarctica. Our strategy is to split Saturdays, so one of us has time alone in the morning, the other in the afternoon, and then have dinner all together on Saturday night. Then we have a family day on Sunday. It gives us some individual time to recharge, alone time with Isaac, and time together as a family too. It may not work for everyone (especially families with a lot of kids), but it's great for us.

And then one sunny spring day, as J. put on his sandals for the first time and I got a full view of his toenails, I threatened to take him for a pedicure. He was half mortified, half intrigued.

"Will they put goop on my feet?" he asked suspiciously.

"Yup."

"Will they, uh, massage them?"

"Uh huh," I answered, trying to appear unconcerned.

"Umm, okay."

So we did it. I got a babysitter and booked two pedicures for a Sunday afternoon. We snuck silly looks at each other and held hands as they buffed and massaged and gooped and beautified our feet. He drew the line at polish, and I opted for pearly pink. When he put his sandals back on, his feet looked healthy and well cared for.

If you haven't heard it, the story goes that the Travoltas deny Jett's autism and refuse to treat it because, as Scientologists, they believe that people with autism and other conditions can cure themselves.

That's a lot of ifs.If Jett is autistic, and if the Travoltas' beliefs prevent them from treating him, and if they are doing nothing to help him, yes, that would be a tragedy.

But we don't know, do we?

We don't know what their family life is like.

We don't know what it's like to have paparazzi follow us everywhere. (Well, okay, maybe you do. But I'm betting you're far more fabulous than me).

We don't know how the Travoltas relate to Jett, or what they do in private. We just don't know.

Last week, when Isaac was having a meltdown in the drugstore, a woman turned to B., Isaac's babysitter, and said, "Why don't you just control your son?" B. is far, far, far too polite to answer her the way she would have liked. "I don't know. Why don't you just control your mouth?" would have been my answer of choice.

She judged. She didn't know.

It's frustrating, thinking about all my friends with kids on the spectrum, kids who don't always get everything they need because the parents' resources are stretched beyond bearing. And then to think, well, here's this family who could probably do anything they wanted, and yet...as much as I'd like to get on my very highest horse, I just can't. I'd feel like a hypocrite.

But I never expected to hear this one from my husband, this afternoon:

"We just got escorted out of a hotel lobby. By security."

It all started innocently enough: a series of beloved elevator rides in a local hotel, a difference of opinion over the number of rides remaining, an agreement to leave, followed by a screaming tantrum near the employee elevator: too alluring to pass up.

J. tried everything: reason, calm murmuring, bribery. Nothing worked. Unconvinced, Isaac took off his shoes and socks and hurled them into a stairwell. After a time, the security guard came over.

"Does he have a problem?" he asked helpfully.

"What do you mean by that?" J. answered, trying to wrestle Isaac's shoes and socks back on.

The guard tried again. "Is there something wrong with him?"

J. looked up, answered simply, "No," as he continued to try to regain the peace. Finally he got Isaac situated and coaxed him down the stairs, where Isaac spied a bank of conference rooms and, curious, tried to enter.

The guard was waiting. "You can't go in there." "I'm trying," J. responded, "to get him calmed down and leave." He picked Isaac up, but Isaac began to kick and grab for the door-jambs.

The guard stood there. "You can't get your son out the door? We've had you on camera for the past twenty-five minutes." Finally, J. managed to get them both out of there.

"Why didn't you just tell him?" I asked later when we were on the phone. "I didn't want to get into it, I guess. Maybe it was the phrasing: 'Is there something wrong with him? Does he have a problem?'"

I get it. Too much to wrestle a screaming preschooler, deal with the situation and raise consciousness about neurological diversity, all at one time.

Tonight at home, Isaac was relaxed, calm, silly, the day's stresses forgotten. He ate his dinner, played happily in the bath, mugged for his grandfather as we took some snapshots. J., on the other hand, was a bit jangled, deservedly so.

He wondered if he'd done the right thing. I can't imagine what else he should have done.

It's pretty common for kids on the autism spectrum to have sensory processing challenges of some sort, and mine is no exception. But it's not always easy to predict what will set him off and what will be okay. A fire-truck or ambulance? No problem. A fire drill at school? Terrifying, though he's learned to cope. It's an ongoing process, this business of understanding how our five senses are supposed to work, and what happens when they're a little out of kilter.

About a week ago, my husband J. took Isaac on one of their regular father-son outings. He's a besotted dad and a resourceful tour guide, and has evolved a sort of internal GPS for which situations are least likely to overwhelm our son.

So he wasn't expecting anything out of the ordinary when he took Isaac to the Farmer's Market, a regular haunt, last week. Apparently, however, Murphy has a law for everything. Here's how it all went down:
After the Farmer's Market, they barely missed a half-full streetcar, so they waited ten minutes for the next one. If you're not familiar with the San Francisco streetcars, they are quite lovely and historic, come from a number of different countries, and Isaac adores them. Finally, an orange one--which had had a long and illustrious former career in Italy--appeared. It was packed, so J. and Isaac stayed toward the front. Immediately, there was a Very Loud Announcement, followed by a Very Loud Bell, which made my son Very Unhappy.

J. and Isaac decided to get off at the next stop, but Isaac continued to cry, still rattled by all the noise. Finally, a skater dude noticed Isaac, went up to him, asked "Hey, what's wrong, man?" and offered Isaac a ride on his skateboard. Isaac climbed on as the skater dude held his hands. He pulled Isaac along for about 10 feet, then turned around and went back again in the other direction. Isaac was delighted.

Calm and happy, they returned to the bus stop and waited for the next streetcar. There had been a steady sound of drumming in the background; a street musician, who's a regular in the plaza. But the sound was getting progressively louder. J. turned around to find a 13-kid drum corps, pounding their little hearts out. The din was so loud that they couldn't hear each other, and Isaac started to cry again, overwhelmed by the noise.

Finally, another streetcar arrived, but the driver motioned that he'd be stopping and wouldn't be taking on any passengers. He motioned to the next car: another orange Italian model--the one that had so upset Isaac earlier. D'Oh.

They gave up and went to a nearby hotel to use the facilities. Isaac was still pretty upset, and when he's upset he tends to resist going potty, afraid of the sound of the flush toilets. Finally, he calmed himself down enough and...it was an auto-flush, which in its infinite wisdom decided to wait until he was in, uh, mid-stream before loudly going off.

You can't make this stuff up.

If you'd like to read more about sensory processing disorder, here are a few resources to get you started:

Tuesday was World Autism Awareness Day, and I spent it on a cross-country flight on which I had the opportunity to watch about four straight hours of CNN, nearly all of which was news coverage related to autism. (The rest, unfortunately, was related to the FAA's repeated failure to ground unsafe planes. Not quite what I wanted to see at 35,000 feet. Ooof.) It was a strange coincidence: the one day I could actually watch four straight hours of news was the day that focused almost entirely on a topic so close to my heart.

I struggled with what I wanted to say here today.

I wrote a long, impassioned post on my personal blog, the essence of which was that all of this divisiveness about causation is distracting us from addressing our children's very real, very immediate needs: care, support, education, a culture of respect and acceptance.

I received several comments on my post from regular readers, and others from people trying at desperate length to convince me that television, heavy metals and cellphones caused my son's autism. And then I watched Jenny McCarthy argue on Larry King Live that she would rather her son contract mumps or measles than be autistic. And I felt ill.

I don't pretend to know what causes autism. As I've said before, I read and I have my opinions, but I know that if I start that conversation, we'll be down a rathole before I've even finished typing this sentence.

But I do know this: autism is here to stay, at least for the time being. And as you read this, many thousands of families--maybe even yours--are receiving a diagnosis, searching for services, struggling for insurance, and trying to regain their footing in a very uncertain world. They need your understanding and your acceptance.

I'll leave you with a personal anecdote: when my son was about two, we were told we should consider starting a special needs trust, since he might never be able to care for himself independently. He didn't speak, and he spent long periods of time just opening and closing doors. That was two and a half years and countless hours of therapy ago.

The other morning, he woke me up with the announcement, "I want Mommy to get out of bed and play cars." Then he paused for a moment, leaned over, and kissed me on the cheek. I was out of bed like a lightning-bolt, and trust me, I don't usually move too quickly in the morning.

As a wise man (my husband, as a matter of fact), once said: "Diagnosis is current events. It's not prophecy."